We were truly horrified to hear of Molly's recent expereince at London's Euston Station and it must never happen again:
I travelled from Maidenhead to London Euston to catch a train to Warrington Bank Quay.
I am registered DeafBlind and a Guidedog owner, I am a regular traveller.
On arriving to London Euston - an extremely busy and challenging station for anyone with a severe sight loss. Whilst doing my best to navigate the station I dropped my ticket and couldn’t see enough to retrieve it , I have just 5 degrees of sight in one eye, I couldn’t find my ticket - I had lost my ticket. At this stage I was not stressed as I did have a printed receipt and a digital record of both the booking and receipts.
Whilst I was stressed I’d lost my ticket I felt quietly assured my proof of purchase would suffice. I found my way to the assistance section of Euston in good time, I was then escorted to the ticket desk where I was greeted by a lady who was the extremely unhelpful “You have to buy a new ticket” I was shocked, I stood there with my Guidedog. I told her I had dropped my ticket and was unable to find it as I am blind, she could clearly see I was stood there with my Guidedog. I asked for the manager who arrived and suggested “18 months ago I could’ve helped you”. He didn’t explain further. Just stating that any lost/ stolen tickets have to be re-placed and repaid for in full before I could get on the train.”
Once again I explained I’d dropped my ticket and for obvious reasons I could not find it, by now I was in tears, completely stressed and anxious, he just looked at me, not an ounce of care or consideration for my situation. The manager just left, leaving me with this rude and unhelpful woman. I took the opportunity to ask what the relevance of why I would have been helped 18 months ago but not now, he response ‘that’s a conversation with the manager!’
This rude woman was quick to charge me full price for a ticket without even asking if I have a railcard - which I do because I am BLIND.
This woman put the card machine down and all I heard was “put your card in there,” I, was in tears and said to her “I am blind’ where is the card machine? She walked away and just left me knowing I was struggling and getting ever more distressed. ‘I can’t see the machine, I asked for contactless she said no, it’s over £30. “Talk to your bank”. I failed to key in my PIN properly first time as the card machine was inaccessible. The woman was clearly inpatient.
As I was about to leave I asked her about my reserved seats - “No, no seats it’s too late.” I was gobsmacked - she had just booked my ticket knowing I am blind, in need of assistance and space for my Guidedog. In floods of tears I told her how unhelpful she was. I am sat on the train currently feeling very emotional and disheartened. This customer serviced is completely shocking. How dare they treat me such a way.
Virgin Trains this is completely unacceptable and I expect an early response, a full apology and a full refund but even more importantly I want your staff to be fully trained and aware of how to treat people with disabilities.
Usher Syndrome is a strange thing, strangely it is evolving even though it hasn’t changed.
It remains a condition without a cure. There are variations in level of deafness, in level of blindness, in chosen mode of communication, in chosen method of mobility aid(s).
We all have daily challenges living with deafness and progressive blindness but it doesn’t mean we are incapable of living fulfilled lives.
Since my diagnosis and acceptance of my condition I have learnt lots of things not just about the condition but also about attitudes towards it.
Sadly there is still ignorance surrounding it and also far too much negativity.
Usher Syndrome is a challenge for all living with it, however the challenges vary from person to person.
Communication is an interesting one, age is definitely, in my opinion a big factor.
It is wrong to assume all with a profound hearing loss communicate using sign language. At 24 years old I have met lots of people with usher worldwide and my observation is that the older generation of all usher types with varying levels of deafness are more likely to use sign language to communicate, but there are some younger people still using sign language, that said some do communicate orally too. There must always be consideration of the varying communication types.
The younger generation, our millennials, are much more likely to be oral, though again some do sign. I believe the reason for the change is because hearing aid technology has never been better. Cochlear implants have made an enormous positive difference along with the complete evolution of hearing aids in my lifetime from analogue to digital and more recently the smart hearing aid - yes, assistive technology wins the day.
It is actually technology that is evolving, not Usher Syndrome and we need to embrace it. To really embrace it there needs to be more understanding of needs and what assistive technology is available and the biggest ask is we need funding for real enablement.
Ever considered a pair of smart hearing aids would cost less then the equivalent of somebody being unemployed for a year and that is without considering the health and wellbeing of a person able to be an active part of society, to be included is priceless in my book.
Neither cochlear implant nor hearing aids are a cure for deafness but an amazing aid for listening, hearing and accessing communication and information, but that is only the beginning.
Did you know the *smart hearing aids I wear have bluetooth connectivity to a plethora of mainstream technology. What this means is that sound is streamed directly from my iPhone, applewatch and to my ears, as a result I can now hear and use a telephone which might not sound much to many but when you consider how often help is still only available via the telephone, it shouldn’t be that way but it is. Using a telephone is also very enabling in the workplace.
Being deafblind and able to hear clearly brings access to the many apps that amongst others Microsoft have developed for the blind that can only be accessed aurally, for instance I can point my phone at an object, person, environment and the app (Seeing AI) will describe it to me. This enables me to be more independent to not be fearful of not having somebody to ask when I am out and about, on that note I should mention the importance of directional sound for somebody deafblind. Since wearing smart hearing aids I have benefitted enormously, I can now not only hear a sound, be it speech, a siren, a sound of danger or an alert of any kind I can turn to that sound and act accordingly. I can now rely on my ears to compensate for my eyes, for me this has been the greatest thing I have experienced since losing my sight.
I always thought I had pretty good speech and I did but since wearing smart hearing aids my speech has improved. I hear speech differently, tones and clarity, a sort of warmness I hadn’t experienced before and has made so much difference.
I no longer feel the isolation I used to in what was a pretty silent dark world. Doesn’t everybody deserve that?
For your information:
These two youtube pieces demonstrate the change in my speech - check me out at age 14, excuse dodgy hair and glasses! https://www.youtube.com/watch?v=z8tXf36Qx6E
then compare now, thankfully dodgy hair and glasses gone too https://www.youtube.com/watch?v=Hq6rRQTIoqM - don’t we want this for everybody?
*Smart hearing aids worn LiNXQuattro by GN Hearing
I regularly champion assistive technology, it has changed my life beyond recognition and I want that for all living with Usher Syndrome who can and would without a doubt benefit.
It’s never been easy. Having to scan the floor in front of you when walking down the street. Having to pre-plan the route to the nearest toilet in a restaurant. Having to feel your way through an unfamiliar room in the pitch black. Having to hold onto your mate as they stroll through the club. Having to desperately apologise to someone after walking straight into them in the supermarket. Those of you with Retinitis Pigmentosa know exactly how it is. Those of you who don’t might only begin to imagine. What on earth is it like to see in front of you, and to your left, but not in the middle? Is it black? Is it blurry? It’s neither. It’s just not there. I ask you the same question: What is behind your head? Is it black? Is it blurry? No. It’s just not there. This is what it is like living with peripheral vision loss. “Oh, you’ve got vision loss? Have you thought about wearing glasses? Are you wearing contact lenses?”. I can’t blame people for being uneducated on the matter. How many people do you ever bump into with peripheral vision loss? It’s just not a common thing.
The eye is a complex thing. Most people know about the lens, the iris, the pupil and the retina. Maybe you know about the cornea, the macular and the optic nerve too. The majority of those who suffer from some degree of sight loss have a problem with their lens; It just isn’t the right shape. Some people are shortsighted, where they are able to see things close, but not far. Some people are farsighted, where they are able to see things far, but not close. Some people just have a lens that doesn’t allow them to see either. This is all stuff that can be corrected with glasses. Glasses simply alter the way the light rays enter your lens, so that the correct image ends up coming out on the other side. Most of you probably know that the image projected on your retina is actually upside down. It is the brain that ends up inverting this image, so we see things the right way around. It’s amazing what the brain can do. There was an experiment where some guy was asked to wear glasses that turned everything upside down for a few weeks. After just ten days he was able to fully adapt to this upsidedowness, and his brain had actually inverted the image back the right way up. The process of him removing the glasses caused him to start seeing upside down again. It then took another week or so for his brain to adjust back again. Similar things happen to those with sight loss. Someone born completely blind just has no possible comprehension of colour. People say things like “hot is red and cold is blue”, but what the hell does that mean to someone who has never seen a colour in their life? You cannot fully comprehend something you haven’t experienced; it is just a fact of life.
“What did you say?”, “Sorry, what was that?”, “Excuse me, I didn’t quite catch that”. No doubt that these are phrases that deaf people almost feel like they need to have recorded on their phone, so they don’t have to waste their breath repeating them every fifteen seconds during a conversation. Being sat there on a table, watching people throw their opinions about whilst moving your head back and forth trying to lipread everything being said is, let’s put it this way, bloody exhausting. Some people are easy to understand; they have a clear crisp voice and speak in a way that resembles the language that you have grown up understanding. Their lips move in a concise manner and they don’t have any lisps or a strong accent. Personally, I find women a lot easier to understand than men. Their tendency to have higher pitched voices really fills the gaps in my hearing loss. On the other hand, some people just cannot be understood, no matter how hard you try. Whether they have a strong accent, a really quiet voice, lips that barely move, or a massive beard that gets in the way, it is just a constant struggle. I’m sure other deaf people can relate, but is there ever a certain person in your social group or who you work with that you just hope you never have to have a conversation with? It’s not that you dislike them, but it is just the fact that you know it will be a constant struggle to have a one to one conversation with them.
It’s not just the social struggles. Being deaf comes with its other problems. Ever wondered what it is like to be woken up by a vibrating phone under your pillow? Trust me, I’d sooner have an elephant wake me up. Ever had to go into a hotel and work out how you are going to know the fire alarm is going off? Ever felt extremely isolated because your hearing aid stopped working or you had forgotten to put fresh batteries in your wallet? Ever had terrible earache, but needed to make the decision between sticking the hearing aid in and suffering, or pulling it out and not hearing? It does come with its benefits though; Being able to turn your hearing off is a huge bonus in some situations. Kid screaming on the bus. Off. Bloke playing his music too loud next to you on the plane. Off. Annoying conversation that you don’t want to hear. Off. Car alarm going off outside when you’re trying to get some sleep. Off.
What’s worse though? Would you rather be blind or deaf? It is a common question that goes around, especially during philosophical discussions with a bit of alcoholic influence. I love these sorts of discussions. It really takes people to a different level of respect for their senses. Some people would rather be blind because of their love of music and the birds singing in the morning. Some people would rather be deaf, so they would still be able to drive their car and see the stars at night. Whichever you choose, it will no doubt mean a significant part of your life will be diminished, or worse, destroyed completely. Some people don’t have that choice though. Some people must deal with both. Being completely blind and completely deaf at the same time is extremely rare, but those who have some degree of both hearing and sight loss are fighting a battle of two competing senses. Typically, one backs up the other. You may hear stories of blind people with supersonic hearing, or deaf people with eagle-eyed vision, but those with Usher Syndrome and other deafblind disabilities are neither of those. One sense doesn’t help the other. Rather, it makes the other even worse. So I think it is safe to say that you should make the most of the senses you have, as it is something that you might one day wake up without. It is our senses that make us who we are, and without them, we would live in a very bland world. But for those of us who are deafblind, I guess we must make the most of those whispers in the dark.
We met a lovely lady from Northern Ireland at a Molly Watt Trust ‘In it Together’ event in Edinburgh in October 2015, she has been a hearing aid user since she was 4 years old and was managing very well.
At that particular event we were very fortunate to have a presentation from GN ReSound’s Graham Roberts who was able to share with us the many impressive hearing aids and products available from the supplier.
That presentation together with Molly’s in depth and ongoing testimony of her GN ReSound LiNX² and how they have enhanced and enabled her life led to an influx of enquiries about how and why these enabling smart aids are not available to those living with Usher Syndrome (deafblindness), particularly as they offer far more than most hearing aids provided by the NHS.
It is fair to say everybody at that event, particularly those using hearing aids where very interested in the enablement smart hearing aids can provide.
Molly coped with standard Phonak hearing aids provided by the NHS until she was 20 years old, however, from 14 years old when she became registered blind, deafblind she struggled and the reason for this in the main was because of her blindness.
For 6 years Molly insisted her hearing had deteriorated even though test after test showed her hearing, thankfully remained stable.
In actual fact what had happened was her ability to lipread, to use facial expression and body language had gone along with her sight, her ability to access sound and communicate had dwindled, demonstrating just how much the deaf rely on their eyes to hear. In other words she could no longer ‘fill in the gaps’ that her eyes had enabled.
It is a fact that the deaf hear with their eyes.
GN ReSound LiNX² provide a hearing experience those who have experienced really benefit from. They provide an incredible clarity of hearing, they enable directional sound meaning that whilst Molly is blind she can now turn towards a sound, something she could not do with her NHS provided Phonak hearing aids, she can also identify not just where sounds are coming from but most importantly she knows the sounds of danger - just imagine how important that is to safety for the deafblind.
These hearing aids have incredible bluetooth connectivity to iPhone and applewatch, also android devices giving the ability to many deafblind to access aurally things they could only dream of previously. Using a telephone as a telephone for the first time ever is most certainly a huge positive.
Not only can they be adjusted be independently adjusted but enable a very personal hearing experience and in so doing bring great confidence and independence.
Our friend from North Ireland was one of many desperate to have access to GN ReSound LiNX² and indeed has asked her NHS audiology department, their response was somewhat bizarre - an appointment with the Cochlear Implant Clinic!
Cochlear implant is amazing technology for the deaf, however, not only is it not for everybody it is also incredibly intrusive, expensive and most importantly not what the patient wants why not consider more enabling hearing aids which happen to be a fraction of the cost.
Figures suggest the cost of 1 cochlear implant would be close to the cost of 10 pairs of best quality smart hearing aids!
There are lots of people who have been hearing aid wearers a long time and like Molly have gotten on very well with them but now need more as Usher Syndrome/ blindness looms close.
GN ReSound have a variety of hearing aids including the ENZO2 for those with a profound hearing loss and whilst they are the creme de la creme of smart hearing aid technology their cost in comparison to cochlear implant is very reasonable.
Cochlear implant involves surgery, it is considered that deafblind people should have two implants to enable directional sound for safety and rightly so, directional hearing is a must for the deafblind, safety is imperative for all, whatever hearing aids worn.
Most get one implant at a time so often two surgeries after each substantial aftercare and rehab at huge cost.
I’m not saying this shouldn't be the case, of course it should where appropriate, however not every deafblind person wants such invasive surgery preferring an alternate option.
Patients should always have a say in their care as it tends to be them who are the real professionals and who will have done the research based on their condition.
I know there is a long and in depth assessment for cochlear implant and so there should be but surely every patient’s individual requirements should be considered?
My friend in Northern Ireland was told there is a 3 year waiting list is this acceptable? Why not consider best hearing aid options?
We continuously hear that our NHS remains financially fragile, that it needs more funding but very rarely do we hear about solutions, about genuine savings that do not include reducing staff - surely this scenario has to be seriously considered
I would like to say our friend in Northern Ireland’s scenario is unique but sadly it is not!
At the end of my work and networking trip to the other side of the world, Mum and I decided on a a trip to the beautiful island of Bali to spend the last 10 days relaxing.
Arriving in Bali was surreal, it was dark outside, I hate arriving anywhere in the dark as I see so little.
We were very tired and our body clocks were already extremely confused! We were met with intense humidity whilst looking for our taxi service.
At Denpesar Airport we were met by a sweet Balinese gentlemen dressed in traditional Bali attire.
I felt quite important when Mum pointed out this man who was stood waiting for us holding a banner with our names on it. This lovely man spoke perfect English and without much of an accent so I was able to understand him quite easily, accents can be a problem for the deaf, thankfully for me, not this time.
The hour drive to Ubud for me was exhausting, it was really dark so I could not appreciate Bali's ornate beauty. What I could see was darkness amongst blurred street lights the lights hurt my eyes. It was incredibly disorientated amd quick sick so I put on my dark glasses turning my focus to communicating with the gent and his colleague the driver taking us to our destination, thankfully with no communication barrier it was pleasant interacting and finding out more about Balinese culture.
On arriving another surreal experience, I was guided by my Mum up some large steps, the lighting was low and I could hear water fountains, both left and right of the rugged steps but I couldn't see them in the dim light. I stopped on the steps holding onto my Mum’s arm, I had not experienced the still yet peaceful sound of water flowing before - I have to admit I felt quite emotional and incredibly lucky to have hearing aids to provide me with such beauty I couldn't see, but my imagination filled in the gaps.
As we carried on up the steps I sensed we were “inside”.
However Mum informed me whilst we were at reception we were still actually outside. Mum gave me a quick audio description which helped me form a picture of serene beauty and tranquility in the middle of a jungle.
There was water all around us in the lobby/reception. I felt frustrated I couldn't see it all, but so grateful to hear the flowing water, to smell the natural smells, flowers, damp trees, the smell of the Balinese countryside and to hear new sounds, I’ll come back to those sounds, the real feeling of peacefulness.
At the reception we were once again greeted by more incredibly sweet welcoming Balinese staff.
After check in and a complimentary sweet fizzy drink (was not totally sure if it was alcoholic or not!) all my senses were truly tested!
Mum soon grabbed me and guided me back down the steps and to what I was told was a golf cart already loaded with our luggage. We were then escorted to our chalet, what service I thought!
On opening the wooden gate into our private chalet I could see a little light coming from within, I couldn't wait to get inside, get some better lighting and really see where I was.
WOW, I was not disappointed, we were shown around our chalet like VIPs, I felt incredibly humbled. The bed was draped in what looked like sheer sheets hanging from the ceiling, the floor was made of large man made concrete slabs, small tables were decorated beautifully with Balinese flowers. The whole decor was ornate and stunning. The bathtub was almost the size of my double bed at home, and then a door opened to what was our outdoor shower! Again everything beautifully decorated with flowers, plants and everything ornate. I was quite overwhelmed and still I could hear noises, noises I hadn't heard before!
I was really tired that night but I couldn't sleep, I never sleep with my hearing aids in but on this particular night I didn't want to take them out. I was enjoying hearing the sounds of the jungle, I knew I could hear birds outside and some running water but really couldn't decipher the other noises, I was fascinated by the sounds, it still amazes me that I can hear outside with my Linx2 smart aids, something I could never have done previously. I went 20 years thinking you only hear sounds in the same room as you!
I fell asleep for the first time ever wearing my hearing aids!
The following morning was an out of body experience! I woke to morning sunlight shining through the sheer drapes from the ceiling around the bed, fortunately the drapes stopped the bright glare of the sun so I wasn't blinded by the brightness.
I hadn't noticed how many large windows with blooming large leaves growing in and out of the chalet met with the primitively made roof in our ornate and beautiful chalet. It all felt incredibly natural, the outdoors reminded me we were in a jungle in Bali.
On opening the patio door, WOW, I couldn't quite get a grip!
Scanning around I noticed a pool, being overlooked by a Hindu God statue fountain, ahhhhh, that was one of the sounds I’d fallen asleep to. The statue was also decorated in beautiful natural Balinese flowers, two sun beds on a small decking adjacent to the pool, and then a straw roofed hut with two massage beds also decorated with flowers. On the patio was a huge chaise lounge, a sink a table with a large bowl of tropical fruit on top and four chairs what more could we need?
A trip to the spa I thought, that really would be paradise, so we booked for that evening.
I was desperate to see what I had missed the night before so Mum and I tested out the outdoor shower, quite an experience and again I was taken aback by the smells of the hand made shower gel, soaps and shampoo it really was something I'll always remember.
Dressed and ready we left our part of paradise and ventured up to the hotel reception area where the restaurant was to be found.
My Mum was chatting to me on the short walk but I wasn't listening, I was still fascinated by the sounds coming from all around me, I could definitely hear birds and definitely more than one kind, I could hear running water. I was trying to concentrate really hard on what I could hear. The sounds were all quite relaxing, I'd never experienced these particular sounds before.
Mum guided me to reception and this time I could see the ponds of water either side of the walkway and I could see huge fish and again fountains shaped like Hindu gods and decorated in tropical flowers. There were also burners that smelt tropical, it really was a feast of the senses.
The receptionist greeted us and offered us a local hot drink whilst we decided on treatments for later that day, finally I felt able to relax after a very long and busy couple of months.
We had a breakfast of fresh fruits and local produce then headed back to our private paradise to enjoy the sunshine and warmth of Ubud.
I was able to lay in the sunshine and unwind listening to the unique sounds of the jungle. My headache lifted and I felt good.
After a day of sheer relaxation and room service I was looking forward to some pampering.
On arriving at the spa we were offered drinks, haven't a clue what they were but they smelt of ginger but tasted of something else!
Two ladies showed us into the private room overlooking the jungle. Inside where two massage beds, the view was stunning.
It was amazing, the whole room overlooked the jungle, ornate frog statues were everywhere, beautiful flowers, I couldn't believe the colours, the smells and the sounds, sheer peace and tranquility.
Having been massaged with magic fingers and hands from head to toe, we were then covered in a seaweed wrap and then before long we were told to shower and then soak in the jumbo sized free standing bubble bathtub which was full of floating flowers with an aroma I'll never forget surrounded by candles it was truly heavenly.
After the masseuse's left mum and I looked at each other and smiled, a long time since we shared a bath! Fair to say we laughed.
'Where should I put my hearing aids Mum?'
I couldn't see anywhere safe to put them without losing them in the jungle or the water!
Mum took them and put them on a shelf near the towels.
After our glorious soak in the huge bath overlooking Bali's outstanding nature, I remember feeling happy that it was still light outside so I could appreciate my surroundings even though it was in silence, it was absolutely stunning.
Getting out of the bath we felt completely fresh and relaxed.
The warmth on our skin dried us in no time, though being wrapped in a towel was somewhat refreshing.
We sat quietly in rocking chairs looking out watching the sunset and darkness descend upon us before getting dressed.
‘I need my hearing aids mum’ Mum's glowing face frowned, she couldn't see them, I was of no help in fading light so sat still and safe whilst Mum searched and then the horror, surely they have not fallen into the giant bath of scented flowers and bubbles!
Mum put her hands in the deep water and horrified she fished out one hearing aid, followed by a second we were both speechless
My mind was racing, 9 days without hearing, 9 days to not appreciate the beauty my hearing aids provide me, the unique and new sounds of this beautiful place and the everyday things like conversation, chatting with my Mum, conversing with the locals, communicating, there'd be none of that accept on those rare occasions when my sight is at it’s best and I can lipread. My mind was racing. I felt physically sick the thought of being blind and not being able to hear filled me with horror, how would I cope.
Mum was speechless, in shock, she knew 9 days without me being able to hear would be tough on us both and would definitely have spoilt our holiday.
Mum insisted I take the batteries out and throw them away. We got dressed in record time.
Mum wrapped my hearing aids tightly in a tissue and put them in her purse.
The walk back to our chalet was in silence. I hung on tightly to Mum’s arm, I felt very disorientated in silence and darkness and felt very vulnerable.
As soon as we got into the chalet Mum unraveled the now drier hearing aids and placed them in a cup while Mum found the hairdryer going on to use it aiming its heat into the cup for 15/20 minutes, it felt like a lifetime after which she asked me for new hearing aid batteries, neither of us felt very positive but it was the only hope we had.
I took the first hearing aid, fitted it in my ear and switched on and there it was the short signal sounds to say it was on and it worked, I was beyond happy, I felt elated. One working will be better than none I thought as I reached for the second hearing aid, put the battery in and again those switch on sounds and hearing aid two on and working WOW, I was so overwhelmed I was tearful - these tiny hearing aids are a huge part of what makes me tick.
I didn't want to switch my hearing aids off again that night, not only was I afraid they may not come back on but I wanted to continue to enjoy the sounds of paradise.
Thankfully my hearing aids did not let me down and continue to work and I appreciate them more than ever.
The following day we talked a lot about the sounds of Bali and that one sound I kept hearing but couldn't identify.
sat at the bar after a tropical shower I asked Mum and the barman what the strange, louder than normal noise was ‘ah’ said the barman, ‘that is the noise of the frogs, they are always noisy at night and even noisier when it rains!’
I was wide eyed, anybody who knows me knows I have a bit of a thing for frogs and yet I had never heard a frog before!
How I love the sound of frogs.
That hour or so of shock was a reminder to me just how important hearing is to me and why others like myself should have the opportunity to use such impressive technology, it really is life changing.
There is no doubt in my mind, if my hearing aids had not worked after the accident at the spa without a doubt I would have struggled, my holiday would have been ruined and my confidence destroyed.
Hearing is my access to people and without people and sight I fall into isolation how obvious that became that day in paradise.
I have written and spoken extensively about my GN Resound Linx2 smart hearing these aids over the last 20 months and what they have given me but that day in Bali, the fear I felt at not benefitting from hearing made me very aware that praise I have given them is little compared to what they give me every single time I switch them on.
NB I would not recommend having your hearing aids anywhere near water or where they could be damaged but am thankful my pair stood that terrifying ordeal.
13th November, the start of my adventure to the other side of the world.
It had been just two days since Mum and I had come off a plane from San Fransisco (that's another blog!) Already we were heading off to Singapore before Perth, Australia where I was a keynote speaker.
I've never flown with Singapore Airlines, I had only heard good things about this airline, so I was feeling quite relaxed.
I was lucky enough to be escorted to the lounge at Terminal 2, Heathrow (all about who you know right!?) after chilling in comfortable chairs and sipping cocktails, we were finally called to board. Mum and I grabbed our hand luggage, I grabbed my cane and off we went, I felt excited at this point, I think Mum did too albeit she had repeatedly expressed her dread for the 12 hour flight to Singapore!
Approaching the plane we were greeted by smiling faces, and the lady hostesses all dressed in a kimonos even notified me when to step on to the aircraft and even took my elbow, 'Good start,' I thought to myself.
Having being seated, I scanned around me to get familiar with the surroundings that would be home the next 12 hours.
We had bulkhead seats, in premium economy so i had plenty of room and being the clumsy person I am these days I felt more comfortable even though I had been seated beside a couple with a young baby - “Don’t lean left Molly” I told myself, I ceraintly wouldn't have wanted to disturb, wake, knock or touch this little one! There was seating for two people and I think it would have been more appropriate for me and my mum to avoid accidents!
I soon noticed the TV screens were positioned on the wall in front, rather than folded and released from under your seats like with BA or Virgin, this was the next negative, yes, great to have extra personal space foot however the screens were of a distance that I could not see them very well at all, very blurred, never mind I thought, hopefully I will sleep anyway, best thing for me to do on a night flight as the cabin is so dark, a real challenge being deafblind and night blind.
Before take off I waited patiently for somebody from the cabin crew to approach to talk me through the safety instructions, give me clear directions to toilets and emergency exits. To run through the entertainment system and of course to show me both where the help button was and the light button but nobody came. I felt anxious.
This was a night flight, meaning the lights were out shortly after we took off, and already I struggled navigating the controls for the screen let alone the chair for light or to even locate where the toilets were. 'I could never do this without help' I thought. How sad did that make me feel? At 22, I don't want to feel like I'm reliant on another and even with company safety of each and every passenger is with the airline.
I am well travelled and my experiences on several other airlines are to board those needing extra time first, to then speak with me on a one to one and to provide information about safety, instructions on where everything is located in the aircraft and to check in with me from time to time. Several airlines would also provide items of safety equipment for me to touch so I’m as aware as I can be.
on board an aircraft is a very difficult environment I struggle to hear as well as see.
When the safety instructions occurred on screen, I noticed when looking up close there was a person in the corner of the screen signing the instructions, Of course this was not accessible to me with my lack of vision, and scanning around the screen I could make out what looked like subtitles but again, inaccessible to myself.
Having taken off and in the sky, the lights were considerably dim (I guess as it was 10:30pm at this point,) however this light I am virtually useless in, let alone in the dark. I was keen to just get my hearing aids out and try to sleep the hours away... As soon as I'd eaten, I then felt around for buttons on my seat to try and push the chair back in a more comfortable position to sleep. The buttons from I could see all had red lights on them... they all looked exactly the same to me. I tried asking Mum, and Mum was stuck helping me and struggled because of her own bulky chair being in the way. Though premium economy is considerably spacious, the actual seats and arm rests are quite compact making it hard for me or anyone else to lean across and help me. We eventually found the 'call,' button and got someone to adjust the chair for me, at this point you could say I was in a bad mood... 'Just sleep Molly,' I thought. I felt totally useless and extremely restricted when all I wanted to do was sleep.
Having eventually caught a few hours sleep, when I woke up it was pitch black, I was totally blind. I couldn't see Mum, I couldn't see my hands, nothing. Not to mention my hearing aids were out. Unfortunately I was suffering with a sore throats and ear ache to make matters worse and more uncomfortable. Next door to me were a couple with a toddler, this couple got a lot of assistance and even got upgraded as their TVs didn't work... 'At least you could see enough to distinguish that,' I thought. I couldn't tell you if my TV worked or not, it was simply inaccessible! I missed out on entertainment on a 12 hour flight. I closed my eyes a few more times to in hope time would pass. Eventually I woke up and it was lighter, it was breakfast time.
Every time the air hostess approached and gave the options of food and drink, Mum had to repeat more than once before I understood/ heard. I was really feeling quite dependent at this point and fed up. Despite continuously struggling the air steward did not offer further assistance.
I even had to ask my Mum where the toilets and exits were, everybody else got the instructions loud and clear at the start, and I did not even know where the toilets or exits were... This is absolutely unacceptable.
I asked my Mum not to speak to the cabin crew as firstly she is not my carer but my Mum, secondly, she shouldn't have to speak to them and thirdly, I did not want a fuss, simply access to everything everybody else has!
My Mum was very cross as she had advised of my condition on booking, at the airport and it was pretty clear, having entered the plane with my cane in hand the crew knew I had a disability - even with all that I was ignored.
The male staff member my Mum approached discreetly made her very angry, firstly stating ‘We forgot’ then suggesting in fact she should be responsible for me on board the flight. Completely unacceptable response.
Well yes, my Mum is my Mum, she is not trained in aircraft safety and accept that she was with me is no more responsible for me than any other passenger on the aircraft.
I am 22 years old and deafblind I would appreciate being treated like an adult and an individual and for one to just offer the reassurance and assistance where need be, especially on a 12 hour night flight. What if I needed the toilet and my Mum was asleep? What if my Mum was in the toilet and I needed help? It is not my mother’s responsibility.
Every passenger's safety on a plane is the responsibility of the airline, every flight begins with a safety announcement yet I was not considered, no thought was given at all.
The crew were very concerned about the passengers beside me having a broken TV, so much so they upgraded them, I couldn't see to know if my TV worked!
I was 'forgotten.'
The two adults to my left with the toddler received a lot of assistance and his parents were right there and fully responsible for him. Mighty special I felt!
If an elderly couple appeared on the plane, air crew would approach and speak with the individually or in any case just say, 'let us know if you need us,' they would not say 'you've got each other, help yourselves.' Contextually, this is the same as them placing full responsibility on my Mum.
My Mum is not trained in aircraft safety. Quite frankly she's a passenger on a plane also, and shouldn't have look after her 22 year old daughter for 12 hours and nor do I want her to.
After making a complaint to the ‘rude steward another man came and spoke to my Mum and was apologetic, however, the damage was already done.
I could not wait to leave the aircraft and when I did I was confronted with a woman who was there to ‘assist’ she advised me I needed to wait for her and other passengers needing assistance. I advised i wants to stretch my legs and I am glad she did as she was intending to take me through immigration which would have been completely unnecessary as I had a connecting flight again with Singapore Airlines so she should have known that.
I dreaded the next flight after such poor service, however, it would seem word had gotten across about my needs and this time my Mum had her say right away, knowing how upset I was from the previous flight.
This flight was the shorter of the two flights and thankfully my needs were considered.
I am not looking forward to flying with Singapore Airlines back to the UK, I believe there needs to be more disability awareness training particularly for those of us with hidden disabilities and sensory impairment on the whole it was not a pleasant experience.
After my recent report regarding very unacceptable treatment whilst flying British Airways Premium Economy to Las Vegas in May I’m very pleased to announce that they have at least changed their ticketing practice and are now able to add both deaf and blind instead of just one disability, this should now make very clear to all staff the unique accessibility needs of any deafblind traveller travelling and to ensure the appropriate support /assistance is in place.
I was very pleased to see this on my ticket for my flight last month to Glasgow.
This is absolutely a step in the right direction however there is still work to do.
I have suggested to British Airways have all safety instructions and menu’s available on the iPads each staff member appears to have which would then solve the issue of accessibility for the majority with blindness, visual impairment or low vision, how simple is that? In my opinion there should always be braille copies of safety instructions onboard for those who need it, according to the people I spoke with on both recent flights this has not been the case for years. Virgin have braille on every flight!
All with blindness should always be offered a one to one to touch and feel safety equipment, without exception, this I am told is normal practice, however, it was not offered to me on either of my recent flights!
It is my belief that more can be done to make life much easier for those with disabilities travelling rather than the many hoops we have to jump through currently.
Technology is always the answer and it should be used to make life easier for both traveller and staff.
Going back to the staff iPad, these are already in use why not enable disabled travellers to set up a profile detailing their needs and upon booking a flight the profile can be added this would be particularly helpful to the deafblind and deaf unable to use a telephone but with specific accessibility needs.
The call to special assistance is usually a long hold then a staff member unsure of what is required, ending the call feeling anxious that needs are not catered for and from my experiences they simply do not get it right.
A personal profile could be set up simply and safely stored by the customer of by the airline with the permission of the customer and applied at time of booking the information then readily available and viewable to all staff and then the unacceptable excuses I was given about breakdown in communication from ground staff to air staff would be eradicated and all disabled people would know their needs would be met.
I very much appreciate British Airways have listened to me and I have seen evidence of this however I am concerned to hear several deaf customers have also had bad experiences recently so there really is work to do.
Hidden disabilities are often the most misunderstood hence the need for all round training.
I personally object to being offered a wheelchair in order to have assistance at the airport, why would I need that? I’d like to be escorted on foot through the quietest checkin and security, I can walk, it is just very difficult in busy unfamiliar areas with a cane or guidedog.
So British Airways thank you for changing your ticketing procedure as a direct response to my complaint and for the offer of compensation airmails or eticket but more importantly please consider my other ideas which will make a difference to millions.
My offer to present deafblind, deaf, blind awareness to your staff remains and I can be contacted via my website.
My next two flights are booked and not with British Airways however I will consider flying with you again to see if improvements continue to be made.
My outward journey to Las Vegas was nowhere near the way it should have been.
The necessary call to ‘special assistance’ had been made by my mum prior to the trip and my specific accessibility needs spelt out then, again at check in and still sadly the necessary provision was not in place.
Whilst my condition is rare my accessibility needs are not overly out of the ordinary:
I personally need safety instructions I can read, so large print and a one to one, maximum 5/10 minutes explanation as to where I can find the emergency exits, toilets and assistance button. In addition to this I would need a menu with large print.
From a safety and comfort prospectus it would be preferable to be seated in a bulkhead seat for several reasons. firstly toilets tend to be near bulkhead seats, secondly I am quite clumsy not being able to see or hear properly I then have a little more personal space and therefore less likely to knock into or irritate other passengers and thirdly if I am travelling with my guide dog she needs that extra space.
As a result of the unacceptable lack of provision and discussion with one of the onboard staff I was assured my return flight would be stress free and that I should not worry.
My experiences widely publicised on social media again I was assured my return flight would be better!
Once again at checkin I checked my disability was recorded in the booking which was confirmed and I was asked if I needed assistance, calling for a wheelchair!
This awful stereotyping and assumption that all people with a disability need a wheelchair really needs to change.
Naturally I did not use the provided wheelchair but did take up the assistance in getting through customs relatively stress free.
I boarded the aircraft with my cane in hand and was shown to my seat and that was that.
No accessible safety instructions or anything else, in fact worse as the entertainment system was not working so the staff did a manual briefing of the safety instructions. I am fortunate to have the very best in hearing aid technology however, I could not hear the verbal instructions very well and certainly couldn’t see the staff member doing his demonstration. What I did hear was things like ‘Your nearest exit can be found here and here’ well, where is here? not useful at all to somebody who is deafblind or blind - this is certainly something that needs to be addressed. Everybody needs full access to safety instructions.
Again the staff member spoken to was shocked and surprised that according to her ‘iPad’ I was not noted as having a disability at all and she showed me her iPad. It occurred to me then, why not have an iPad available to people like myself with the safety instructions on it, then each individual could then adjust text to their personal needs, simple!
Evidently any person travelling with a disability should have a small sign beside their name indicating such - strange as ground staff had confirmed it was on the booking at checkin. At this stage I was informed BA could only identify me as either deaf or blind not deafblind as their system would not allow it - SPEECHLESS, clearly my needs could never have been considered appropriately with this system.
Needless to say my experience with BA had not been a good one and I am sad to say exactly the same happened to me on a flight to Hong Kong in 2012, back then I was assured the system would change!
I travel a great deal as do many with my condition and the service I endured was not acceptable and as a result I have publicised my experience in the hope BA will consider the deafblind and look to address the unacceptable treatment I endured.
I am absolutely delighted to say today I received notification from BA that as a result of my experiences the following has happened:
BA’s Customer Services have conversed with their both Policy Manager and Facilitation Manager and as a result their system will now allow both deaf and blind indicators on their bookings, sadly not deafblind as their system won’t allow it at this time, hopefully this will come, but this is certainly far better than previously at least now cabin crew will know when a passenger has more specific accessibility issues.
I am oral however some with my condition (Usher Syndrome) may need safety instructions in braille, some might use sign language.
I think it would be prudent of airlines to consider communication needs also.
I’m told it is now possible to select both deaf and blind when booking too which is great news as many deafblind are unable to use a telephone to advise of their needs.
Of course this hasn't made my experience any better but it has given me faith that I have been listened to and that BA have immediately looked to improve their service for all deafblind travellers and of that I am eternally grateful.
So, again thank you to social media for enabling me to get my message across to British Airways and to British Airways for listening and acting.
Something I am often asked at my presentations is what is the best and most acceptable way to approach or get the attention of a deafblind person.
My answer would be ‘touch,’ however so many seem uncomfortable with this!
I have noticed here in the UK most people are not as “touchy feely” as those in Europe.
Here a greeting tends to be a fairly stiff and formal handshake which is a nightmare for me as I cannot see a handshake coming, whereas in Europe and further afield a greeting is more of an embrace, a kiss or cheek to cheek which is better from my point of view as I am able to establish eye contact fairly easily.
I think the general feeling here is not wanting to evade somebody’s personal space, however for those of us with sensory impairment being touched/tapped appropriately as a way of getting somebody’s attention is no big deal and usually acceptable.
I was born deaf and now deafblind I can say getting the attention of a deaf person is different to getting the attention of a deafblind person.
Touch has taken on a whole new meaning.
Before I lost my sight I got used to being tapped on the shoulder to get my attention, tapping is acceptable.
I could use my sight to compensate for my deafness, a tap would bring an immediate response in that I would turn and look to where the tap came from. On getting eye contact a conversation could begin, orally or sign language as I could lipread, follow facial gesture and body language.
Reliance on visual clues on a one to one basis is always much easier than a two, three or more way conversation, something to bear in mind.
I am oral, however this would be the same irrespective of method of communication. Whether communicating with speech or sign language most deaf people lipread.
Being deaf means concentrating really hard on all visual clues to aid with listening and communication and is very tiring.
Environment can make a big difference, quiet or noisy, light or dark can effect communication and patience is always appreciated.
If approaching somebody you know to be deaf and who's involved in a visual orientated conversation, the key would be to tap that person on the shoulder and wait until they turn to face you - DO NOT stand too close, or exaggerate your lip movements when you open conversation.
Be happy and willing to repeat yourself if asked to do so, repeat, not shout!
Equally if somebody uses sign language allow that person to tell you how they would like to communicate, just because you might not sign do not think you cannot communicate, there’s always a way be it by gesture and a little guess work or even by writing things down.
NEVER, NEVER, NEVER think deaf, cannot hear so no point trying to converse at all. We all want to be included, isolation is a very lonely place. Think VISUAL,VISUAL, VISUAL.
This is how things worked for me whilst I was deaf.
I enjoyed socialising and rarely felt left out.
In mainstream my friends knew to give me a tap on the shoulder to get my attention and I coped very well.
The time I spent with deaf children I noticed they used touch regularly to get each others attention, they would also flick the light switches on and off which I hated as changing light effects my sight so much and is painful, not to be recommended, tapping far more friendly for all.
For a deafblind person, the approach is different.
A tap is a gentle touch and not as useful for a deafblind or blind person.
I benefit more from a hand gently placed on my arm or shoulder, this enables me to turn towards the hand touching me and scan from where the hand is upwards toward the face of the person wanting to converse with me.
Once I’m looking towards the face then speak clearly. This is really helpful.
As someone who has both deafness and blindness the sense of touch has become so important as has the sense of smell in my daily coping strategies.
Both senses enable familiarisation, familiarisation of places, of people and of things.
Touch is another way the deafblind communicate, hand on hand or tactile signing, braille.
I’ve often wondered is the thought of simply touching somebody offputting, if it is please reconsider, I would far rather somebody touched me to get my attention than ignored me.
I always want to feel included, I want people to want to talk to me, to feel comfortable in my company.
I am Molly, I just happen to have Usher Syndrome.
“Blindness separates people from things;
deafness separates people from people.” Helen Keller
I recently read a piece virtually comparing hearing aids with earBuds / EarPods and hearing aids with glasses!
I read the piece several times and still thought it strange. I'm 21 years old and have worn hearing aids since 18 months old. Even in my time hearing aids have come a long way, in fact with this comparison to earbuds / EarPods the look appears to have come full circle however the technical ability has improved tenfold.
I can remember being shown a picture of a friend wearing hearing aids probably 30 years ago. A big bulky box worn on the chest with wires to the ears, I felt so lucky to not have those but the hearing aids that sit on my ears and attached to ear moulds.
My issue from about 3 or 4 was that I wanted coloured hearing aids not the skin coloured ones that old people wore in fact up until I was about 10 or 11 I insisted that both hearing aids and ear moulds were pimped up in bright colours, being young and female I wanted to make my hearing aids look cool, trendy and fashionable, something to be proud of, just like being deaf.
Back then it was all about the look rather than what the hearing aid was actually doing for me.
So I disagree that hearing aids couldn't be made to look fashionable, even then, yes more limitations than glasses but they could be made to look how I wanted them to.
For me the only difference was that wearing hearing aids was more rare at school than wearing glasses.
In the early days I wore a radio aid in as trendy a bumbag as possible, I had just about every colour, shape and size you could think of thinking back my friends thought it quite cool, the wires I hated that attached to my hearing aid via a special connector (a shoe) made it look as if I had and was listening to what was then called an MP3 player, back then they too had wires.
I hated the wired connection but my friends thought it quite cool! Thankfully as time went on I was delighted those horrible wires disappeared and wireless radio aids became available.
The fact hearing aids have gotten smaller and more discreet is a bonus and I no longer wear brightly coloured ones the most important thing is that my hearing aids now allow me to hear as best I can based on my level of hearing loss and in as many situations as possible and it is this assistive technology that costs.
The hearing aids I wear today, Linx2 are tiny and along with the amazing access to sound and connectivity they give me they do allow me to stream music direct, however thankfully that is just a tiny part of their capabilities as being deafblind my need is far greater.
I read "Today's hearing aids are overpriced and unimpressive".
I totally disagree I was born deaf and registered deafblind with Usher Syndrome at 14 years old and I've never been so impressed in my life, the bigger issue is making this amazing and enabling assistive technology available to more.
The best technology will always come at a price and for people like myself be a necessity in allowing accessibility to the world that most take for granted.
My Linx2 hearing aids pair perfectly with my apple products and allow bluetooth connectivity to all sorts of things, they enable me to do so much more than listen to music, they are as I've said before "Life Changers"
Small and wireless is fantastic but earbuds / EarPods my Linx2 are definitely not!